Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space.
Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The Connected Health Symposium is not one of the larger health conferences, but it is one of the most respected. I met a number of leaders in health IT there who praised it for the conference scope and seriousness, and told me they were glad to see me there covering it.

Many issues in health IT and patient empowerment, however, are best learned not from any conference, but from the tussles and tears of everyday life. Let us hope no reader has undergone the personal experience of having her reports dismissed and of being misdiagnosed, as did several speakers at the conference.

But many of us have spent three hours on the phone with an insurer to approve a single medication shipment, or fought in vain to get the medical records that US law requires providers to give us, or watched our doctor fumble with his new EHR for fifteen minutes while trying to stay engaged with us.

These institutions would be comfortable using swyMe, a HIPAA-compliant telemedicine system that allows doctors to interview patients over everyday mobile devices and perhaps avoid a trip to the hospital. swyMe can also transmit audio and video from devices that EMTs can connect up to the phone. (Not many devices with the necessary hardware connectors are on the market, though.)

swyMe was one of the “innovators” highlighted in a conference demo. Jeffrey Urdan, COO of the company that makes it, told me later that he felt “low tech” compared to some of the fancy, expensive devices at the demo. But most of the providers in the US, and elsewhere, are more on swyMe’s level than theirs.

Another hurdle to forming connected teams that serve the patient is interoperability. A sign of the distance we have yet to come can be found in iCancerHealth, a service for cancer patients offered by Medocity. A free app is available to individuals, but the main integrated service is offered through providers or pharma companies doing clinical trials. The service includes such conveniences as medication tracking, treatment plans, a diary, audio and video connections to their physician, and even a way to form communities with other patients.

This is great, but iCancerHealth works with data from only one provider. This can be a limitation even for the few months that cancer patients typically use the service, and could certainly be a problem if the service were expanded to a broader range of illnesses. Similarly, there’s no seamless way to share data with patient communities; it has to be re-entered manually. Enhancing the service to encompass multiple providers would probably require wider adoption of electronic health record standards.

As an example of finding a creative solution to devices that lack interoperability, Mobile Diagnostic Services demonstrated an app that could photograph the display panel of a device, interpret the bars on the display to create digital data, and transmit the values to a health record in the cloud. This is a process well-known to computer programmers from thirty years ago as “screen scraping,” now relevant to the health industry.

One of the strengths of the Connected Health Symposium was the platform it gave to patients and doctors to express their frustrations with the old way of delivering care and the slow pace of change. The testimony could come from entrepreneur Robin Farmanfarmaian, who lost three organs unnecessarily to misdiagnosis, or Sarah Krüg, president of the Society for Participatory Medicine, whose parents died from diseases that might have been caught if the doctors had paid attention to their reported symptoms.

Or the testimony could come from Greg LaGana and Barry Levy, MDs who write and perform in a musical review called Damaged Care that skewers everything about doctors behavior as well as the legal and financial environment in which they have to operate.

Anna MCollister-Slipp, co-founder of Galileo Analytics and a sufferer from type 1 diabetes, regaled us with the dozens of vital sign measurements, treatments, and other details she has to manage on her own manually. She still get lab reports only because her doctor sends them via email (using a private account, so that HIPAA zealots don’t discipline him–the rights and wishes of the patient are supposed to be paramount). Like other conference attendees, though, she reported progress in tools and patient-oriented culture.

Less was heard at the symposium from other sectors of the medical field, but we did hear from Michael of Aetna, Jonathan Bush of athenahealth, and Beverley Bryant of England’s National Health Service. The panel on which Bryant spoke proved to be discouraging. Many of us in the US like to think that other developed nations with their universal health care systems have solved the coordination and interoperability messes that the US is in. But the panelists expressed many familiar frustrations.

I plan to return to the Connected Health Symposium next year, and I’m sure each year will bring a bit of progress toward better communication among staff, better use of patient data, and better integration of tools. The mood at the show was largely positive. But a little probing turned up barriers in the way of the healthcare system we all want.